Having children after diagnosis

I was diagnosed with MS when I was 31. I had only recently got engaged and becoming a father seemed like it would be a natural progression for me. Throw MS into the mix, however, and there’s a lot more to consider. For example, fertility became a major factor when deciding which medication to take. I was given information packs regarding each course of medication that I was considered eligible for. Some affect fertility in both men and women, some affect a woman’s fertility only and other’s don’t affect fertility at all. My condition was stable so I only considered medication that would not affect my fertility. Thankfully less than a year after starting medication we were expecting our first child.

Oliver was born in January 2017 – almost 2 years to the day after my doctor advised me that my MRI results came back indicating it was MS causing the blurred vision, dizziness and fatigue. After a week in the hospital we were allowed to bring him home. The moment I got in the car, ready to drive my wife and our newborn son home to start our new life, was the most life affirming moment I have ever experienced. The journey was well and truly underway. I was expecting the sleepless nights to start immediately. I almost felt guilty that he slept so much initially, particularly when I had heard the struggles so many have with newborns. This allowed me to combat fatigue in my usual manner which I was grateful for.

The sleep deprivation, however, kicked in about 3 months later. It got to the stage were I could no longer tell the difference between fatigue and lack of sleep. The sleeping arrangements changed regularly – from sleeping in his cot, to co-sleeping with his Mam and I, to just co-sleeping with his Mam, to just co-sleeping with his Dad. There’s plenty of books out there to help with these scenarios but sometimes you just have to go with your gut instinct too. When Oliver was 18 months old we received advice from a midwife and qualified sleep consultant who gave us a routine to work with.

It took a few weeks to implement the midwife’s advice but once we did we noticed a significant improvement. The first noticeable improvement was in his speech, however, he had still yet to walk. I booked an impromptu day off work and walked with him in his buggy to the promenade in Clontarf. I would go walking there regularly myself when I had to regain my confidence in my own mobility around the time of my diagnosis. Something about the sea air helps me think more clearly. Anyway, I took him out of his buggy on the grass facing the Poolbeg Chimneys across the water, I held his hand as he nervously stood up, I cautiously let go of him and like that he took about 20 steps in a row before happily falling onto his bum. We instantly started to laugh and lay on the grass hugging each other. Even at such an innocent age he knew what a big achievement taking his first steps was. It seemed fitting that my son would take his first steps in a place that his Dad used to walk so often and associates with helping him regain his self-confidence when diagnosed with MS.

When initially diagnosed one of the first thoughts I had was how long until I’m going to need a wheelchair? I now know that relying on walking aids is by no means the end of the world and in many ways really help improve a person’s quality of life. One thing as a parent I’ve really noticed is when pushing the buggy there are so many obstacles to overcome such as access to elevators and cars blocking pathways. Places tend to be avoided if they are not easily accessible whereas a small change in mindset regarding accessibility would make a big difference to so many people.

It’s now one year since Oliver took his first steps. Like any child he still likes to be lifted when it suits him. Yet, the older they get the heavier they get. I struggle lifting him for any prolonged period nowadays as the sensation at the base of my spine becomes too painful to hold him for too long. I can only attribute this to an unsuccessful lumbar puncture I had while being tested for diagnosis. It’s difficult trying to juggle family life at the best of times – you want to prioritise your child’s wellbeing at all costs. Yet, with both parents working full-time, trying to maintain a healthy lifestyle, having to remember to take your medication & Vitamin D supplements, all the while dealing with fatigue and brain fog on a daily basis conscious that if I sway far enough away from the daily routine a potential relapse could be waiting for me, it can be a strain to say the least.

There’s no stopping him from getting up to all sorts these days. Cuts and scrapes happen so often now he believes plasters are the solution to all life’s problems. So when his Daddy is having some well needed rest and he bursts into the bedroom…. “Dada, get up Dada!!” “Sorry son, Daddy isn’t feeling well and needs to rest” “I will get you a plaster”…. I can’t help but smile.

Into the Unknown

After months and months of training, the big day has finally arrived and not a moment too soon.

Hopefully the Marathon goes according to plan.

I have had to forego blogging as I just couldn’t commit my time to it. I really believe my lack of writing has had a negative effect on my cognitive abilities. Anyway, I digress. It’s been an eventful few months to say the least. Most recently I had to have an MRI on my heart but that was only the epilogue to the long process that will see me face my toughest self-imposed challenge to date. I hope to find the time in the coming weeks to be able to blog about the journey that got me here…

In the meantime here’s the link to track people during the race and to my charity page 😊

My marathon number is 12014. You can follow my progress via the app. I’m in Wave 3 which starts at 9.30 am on Sunday Oct 28th

https://play.google.com/store/apps/details?id=me.rtrt.app.dbm

My charity page is below. Thankfully my target has been met but any further donation s are more than welcome 😊

https://give.everydayhero.com/ie/half-marathon-for-ms#

#KBYerrr

I just… felt like Running.

“Nobody ever mentions the weather can make or break your day”

It’s great drying weather out there. The clock’s have sprung forward and it couldn’t have come quick enough. The inevitable “There’s a great stretch in the evening” memes are more than welcome this year. Honestly, it’s felt like a Game of Thrones type of Winter with no end in sight. Being Irish, we should be prepared for all kinds of bad weather yet we batten down the hatches at the first sight of rain and I’m as guilty as anyone.

Yesterday saw the first real sunny day of the year and I knew I had to capitalise on it. Between the constant rain and snow, the opportunities to go for a run have been few and far between. The less active I am the less active I want to be. Inactivity creates lethargy. First thing’s first, I put the washing out on the line to dry; this was too good an opportunity to miss. No sitting in the kitchen drying on the clothes hoarse for this wash!! Then, I got my running gear ready, done the obligatory few minutes of stretches to get the blood flowing and body heated, and off I went.

Even as I set off I had no idea which route I would take. I was just glad to get out. For the day that was in it I decided to run to Clontarf. I knew even before I got there that I would see family’s out and about, with their children and dogs, cyclists, other runners, the abundant variety of birds hovering on the shoreline and, of course, the Poolbeg Chimneys majestically overseeing it all. It was a no-brainer really.

I hadn’t planned on it, but about 15 minutes into the run, I started to get notions. I’ve always intended to go running on the beach at Dollymount Strand but I’ve never got round to it. The furthest I had run, from my house, was as far as the Wooden Bridge which is a good 5km into my run but it’s at least another km further to the beach. That’s an achievable goal for me to reach, still the problem would be the return home. My fitness is not at that level yet and I’d be foolish even to chance it.

A while ago I got an email from a girl in work, Jill. In the email she asked for sponsorship for a 10km she was running to raise money for MS Ireland as her sister had been diagnosed a number of years back. I knew straight away the email was sent to me in error as we didn’t really know each other back then and there was no way she could have known about my diagnosis at the time. Anyway we got chatting as I thought it was a strange coincidence that I received an email about MS by mistake. Naturally, I donated. Now I chat to Jill regularly in work. Not only that but she has convinced me to sign up for the Dublin City Half Marathon in September in aid of MS Ireland. It’s funny the impact MS has had on me; both good and bad.

Feel free to join us, the more the merrier 😉 –>

http://sseairtricitydublinmarathon.ie/race/dublin-half-marathon/

So there I was, yesterday, as I reached the Wooden Bridge at Clontarf; “Feck this, I’m training for the Half Marathon. I’m going for a run on the beach!” Sometimes you have to act the fool. By the time I got to Dollymount Strand I had pins and needles in my right foot and couldn’t feel a thing. The sensible thing to do was to stop and walk until the feeling returned or at least turn back. I get very stubborn when I run though. I ran the length of the beach and turned off to run toward the Bird tree-top sculpture at Saint Annes Park. The pins and needles persisted so I start running faster even though my energy was rapidly dwindling. Luckily, as I ran faster the feeling soon came back to my right foot and I managed to continue jogging albeit at a much slower pace.

Bird Tree Saint Annes.png
Me and my pals Peter and Gar at the Bird Tree-top at Saint Annes Park: Sept 2016

I had threatened to do this run for such a long time but had no intention of attempting it when I left my house yesterday morning. I was in no way completely ready to do it. But I wanted to stay out while the sun was still shining and try get Vitamin D naturally for once. The sun once was a deterrent for me going outside, now it’s the protagonist. I was being both foolish and stubborn and I regret nothing.

I kept thinking on the home straight about Homer Simpsons attempt to jump Springfield Gorge “I’m gonna make, I’m gonna make it, I’m king of the World!”. Of course, Homer didn’t make it (click here for the link) but as with most things in my life there always has to be a Simpsons reference to fall back on. I finished the run in 1 hour 48 minutes and 25 seconds. I practically crawled for the last few kilometres but I did it and I’ll do it again. Just as inactivity creates lethargy; energy creates energy. I done my stretches when I got home and felt a few pains today but nothing I can’t handle. I even went for a walk back to Clontarf with Michelle and Oliver 🙂

I have set up a charity page for the Half Marathon for anyone who would like to donate; https://give.everydayhero.com/ie/half-marathon-for-ms

My MS Update

I have had to go back to the hospital, for blood tests, every month since last September when I started on my new medication. My white blood cells are not at the level they should be which means I’m more susceptible to infection. I may have to consider changing medication again if it persists. All part and parcel of having a chronic illness I suppose. My next MRI is booked for May so that should tell me more, particularly about any additional lesions; which I suspect there are. In which case I mightn’t have a choice but to change meds. I’m lucky that my mobility hasn’t been affected since my initial diagnosis, however, there are other constants like spots in my vision and fatigue that just don’t go away. Running, I find, is the best way way to alleviate these.

Yesterday’s run is the most I’ve pushed myself since as long as I can remember and I’m really feeling the benefits of it.

“Nobody ever seems to remember life is a game we play”

#KBYerrr

Face Everything and Rise

I heard an inspirational quote recently that I shared on my Facebook blog page:

“FEAR: Forget Everything And Run
or
FEAR: Face Everything and Rise

The choice is yours”

November 2017 was a month of firsts for me. I was interviewed for the first time ever about my MS journey so far. The same day I took part in my first ever race. I was delighted to do the 10km run in dark in under an hour.  A week later I was on the radio which was a serious fear to overcome.

The links to the interview and radio pieces are below:

Independent.ie

RTE Radio One

Radio One synopsis

Also, below are links to the Trinity talk and Rosie’s (who took part in the RTE Radio interview with me) blog:

MS Trinity College Talk

https://sherunswithms.wordpress.com/

#KBYerrr